Tuesday, April 26, 2016

EEG Results ~ the Good, the Bad and the Ugly

Thanks to a well connected friend, we were able to move Reagan's neurology appointment from May 10th to today (big thanks to you my friend!!)  This was super helpful not only because we are anxious to get the results and talk about what they mean for Reagan, but also because I will be in Copenhagen on business May 10th and I HATE missing appointments like this one.  Anyone who knows me is well aware that I always have more than the average share of questions.

So here's the breakdown of how it went today...

The Good
Because I always have to find something positive in everything...I'm forced to include The Good. It is good that Reagan has responded well to Trileptol and has been seizure free since April of 2012.  For four years we have successfully kept her brain quieted down.  We know many people who have needed multiple surgeries after multiple medication combinations have failed just to stop the seizures so we don't take it lightly that this is a true blessing. Our hearts and prayers are with those families still trying to find solutions.

The Bad
Reagan's EEG shows continued sharp spikes of abnormal activity especially as she was moving into sleep.  This means not only is she more likely to have seizures when tired, but also that she will need to continue on her medication.  The risk of seizures is too high to stop the medicine. We were very discouraged to hear this and even more discouraged that the last EEG (two years ago) was in an old system so Dr. Lavenstein was unable to compare the results to determine if we could at least say that there is LESS abnormal activity.  Do NOT get me started on EMR and my frustrations...

The Ugly
So we talked a lot today about the "what if's"...which every doctor hates but I'm sure they are used to the onslaught of questions.  There are multiple factors that weigh into the probability of Reagan ever being seizure free again.  First, what caused them to begin with - for her it was structural.  This is the worst case scenario for hoping they will stop since she has permanent scar tissue in that area.  Another factor is the type of seizures.  There are over 40 types of seizures and Reagan's are classified as Complex Partial.  This type of seizure starts in the frontal lobe and moves to other areas that affect alertness and awareness.  Unfortunately given these two factors alone, the likelihood of Reagan ever having a normal EEG is close to zero.  Yes, that's the UGLY part...but there's more...abnormal activity in the brain only makes someone MORE LIKELY to have seizures, but does not necessarily mean definitively that they will have seizures.  So it's a bit like playing Russian Roulette...how much abnormal activity could cause her to have seizures?  No one knows AND everyone is different.  It's too difficult to control for all the variables to have accurate research and statistics.  Additionally, these results will be influenced by age and certain developmental stages like puberty.  So what does this mean?  She will stay on the medication knowing that the longer she is seizure free (regardless of having abnormal brain activity) the more likely she could be seizure free and non medicated in the future.  BUT, this means if we ever decide to come off the medication, it will likely be a very scary adventure of "wait and see" because we will not likely ever have a normal EEG.  So the hope will be that we've quieted her brain down long enough that even with abnormal activity her brain will not advance to send the electrical activity that develops into a seizure.  The ugly part is that we won't know until she is completely weaned off the medication, and even if she is seizure free without medication (as she was from Aug 2010 - Apr 2012) they could return at any time.

So for now we will stay the course and try to remember how blessed we are that she is not having seizures.  He suggested we return in 6-8 months and plan another EEG next year at this time.  Luckily it went very smoothly this year and it's completely non invasive so it doesn't hurt to just check and see if anything has changed.  We did talk about moving to a pill form of the medication which would be administered once daily and will be more stable.  We plan to work with Reagan to teach her to take pills and consider that when we go back in 6-8 months.  Our biggest challenge with the medication is that it can't be cold and it can't get hot.  So over the summer when we take trips to Hershey or the beach it can't stay in the car.  First world problems I suppose, but it is something we have to take into consideration.

On a separate note, I spoke with the nurse at The Vision Center at Akron Children's Hospital today.  She said we will not get an appointment until August and we will not know when the appointment will be until the beginning of June.  We are hopeful, however, that we will have the appointment before the end of summer so that Cole doesn't have to miss the beginning of Kindergarten!

And given I ALWAYS like to include pictures and something fun we are doing, here's a quick update. We were able to take a tour of "The Cage" where the Marines Corps keeps the HMX1 helicopters that fly the President of the United States, otherwise known as Marine One.  We had a private tour from one of the Marine One pilots Johnny knows.  It was such an informative tour and an absolutely amazing experience to see the Sikorsky helicopters.  So cool to sit in Obama's seat and think about all the debriefs he and so many of his predecessors have had in that chair over the years. Also wonderful to hear how much he appreciates the team of pilots who travel the world with him. In addition to boarding the two styles of M1 helicopters we were also able to board the Boeing Osprey helicopters that transport the rest of the detail who often travel with the President. Definitely much bigger helicopters and not authorized for the front lawn of the White House.  The kids had fun sitting in the seats and jumping out the back.  Definitely a once in a life time opportunity and we are so grateful to the pilot for taking the time to give us the tour on his day off!

Tuesday, April 19, 2016

Follow up EEG and possible nystagmus surgery

I remember growing up we had a neighbor who had seizures.  I remember his mom running to our house frantically asking my dad for help (he's a pediatrician).  I remember thinking in later years that seizures didn't really seem like a big deal (perhaps because my dad was always so calm and supportive).  I learned that you keep the person from getting hurt and talk to them and usually all will be ok.  It wasn't until I had my own child with seizures that I started thinking about what would happen if she was at the top of the playground equipment when she started seizing.  Or whether this meant she wouldn't be able to drive a car.  And I definitely didn't think about whether she would soil her clothes in her classroom as her friends looked on horrified.

So many times in the last six plus years I've thought about our journey and the journey of so many around us.  I've spent hundreds of hours in waiting rooms reflecting on our situation, wishing we weren't facing it and yet seeing others with similar or more challenging situations.  We feel so blessed with how well Reagan is doing, but it doesn't change that we want her to be able to be off her seizure medications.  Although truthfully it gives peace of mind to know she is medicated (and therefore they are controlled).  Coming off medications is frightening.  But we remain hopeful that by giving her brain extended periods of time that are "quiet" that one day it will forget about the scar tissue and stop sending signals to that area so that the seizures are dormant.  And that is precisely why Reagan had her follow up EEG Friday, April 15th.  Not a fun way to spend her school vacation day, but it allowed us to spend the day with her.  She was required to limit sleep to only 4-5 hours Thursday night.  So Johnny took her to Wal-Mart that night to kill some time and then came back and watched movies.  He kept her up until about 1am and they both went to bed.  I set my alarm for 5:30am and was up with her in the morning.  The tech was very good with Reagan and everything went smoothly.  She had the electrodes glued to her head and then the machine started reading her EEG.  She had to do some counting forward and backward and then watched a series of very bright flashing lights with the room dark.  She was then asked to fall asleep.  Overall it went smoothly and we're anxious to get the results.  I called today but they still haven't been read.  The nurse suggested I call again at the end of the week to see if they've been read yet.  Prayers that I have good news in my next post!

Monday we also had an appointment for Cole with the ophthalmologist, Dr. Jeffery.  It was his routine 6 month follow up with dilation.  There is a test they use with a machine where the child places his chin on a ledge and his forehead against another guide while looking into a small view finder.  The machine measures his vision.  This was the first time the tech was all able to get a reading using this machine.  Historically they've had to rely completely on the prisms they hold in front of his eyes to determine his vision.  Unfortunately, his nystagmus prevents the machine from "seeing" into his eyes.  This time it was able to get a reading, but it was extremely variant since it would catch his eyes at different stages of the shaking.  Regardless, this was a good improvement in my opinion!  The appointment went well and although his prescription did change, she said he overall looks very good.  Dr. Jeffery did bring up the nystagmus surgery again, called a tenotomy.  She said we should consider the surgery but suggested we visit the leading nystagmus specialist in the country, Dr. Richard Hertle, at Akron Children's Hospital in OH for a second opinion.  Dr. Hertle works with Dr. Burnstine who was the first to perform this surgery.  Dr Jeffery said most kids with nystagmus have very jerky eye movements but Cole's are more of a long pendulum swing.  She's uncertain how effective the surgery will be but thinks the testing Dr. Hertle will do may give us more information.

"The procedure – which involves detaching and reattaching horizontal eye muscle to the same location – is intended to trick the brain and slow down the uncontrollable, darting eye movement," said Dr. Burnstine, who was the first physician in the world to perform the surgery. "It sounds simple, but it seems to work. It's like rebooting a computer." On average, patients have experienced a 20 percent improvement in their central vision and about a 50 percent improvement in their peripheral vision.
So it's off to OH to get more information and see what Dr. Hertle thinks. I've "talked" to several people (through Facebook) who have been his patients (or their children have) and the reviews are excellent.  I called his office today and have completed the paperwork.  We are now on a wait list for an appointment.  Since we are from out of town, they book a 3 day appointment - there is extensive testing Wednesday and if we and the team believes surgery is warranted then surgery is the following day, Thursday.  Friday there is a post op appointment and then we head home.  The hope is that we will get an appointment sometime in July or August but it's now a waiting game.  We are obviously somewhat conflicted about this news and possible surgery.  With any surgery comes risk...but I've conversed with moms who have had kids who were legally blind and unable to ever drive a car and after this surgery have been given a second chance at living a more normal life.  To give you perspective, I took the kids to the circus Saturday night and was able to secure 3rd row seats.  We were about 20 minutes into the show when Cole said, "hey mom, is the circus going to start soon?"  My heart sank and it broke my heart.  So while he is doing very well, his struggle is real.  And as the hope builds at the new prospect that there may be a way to improve his eye sight, the anxiety about the dangers of surgery become more real.  We are once again faced with a tough decision and must lean on the medical team to decide which direction to go.  Hopefully I will have more updates soon on both these situations and hopefully I will have good news!!

To end on a positive note, Reagan started lacrosse this month and LOVES it!  She had her second game Saturday and even scored a goal!  We are so proud of her and are excited she has found something she really enjoys.

Saturday, April 9, 2016

Algonkian Tribe Girls K/2 Game #1 - therapy comes in many forms

As I watched Reagan play her first lacrosse game today, I couldn't help but think about her initial diagnosis and how far she has come.  We are mentally gearing up for her repeat EEG Friday and it naturally brings back so many emotions.  I vividly remember when the neurologist walked into our hospital room and told us she thought Reagan had schizencephaly.  A diagnosis which would have meant almost complete mental impairment.  It's hard to explain the feeling of having all your dreams shattered with just one word.  Feeling that so much of your excitement for your new baby was stripped from you so easily.  The following day we learned she didn't have schizencephaly but rather had grey matter heterotopia. Going into brain surgery two weeks later we again didn't know what her outcome would be. And for several years thinking about a day like this definitely didn't feel like a reality.

When I downloaded these pictures and saw her extension on this throw I almost started to cry.  We have gone to thousands of hours of therapy (literally) and I have stood by her as she has cried about leg braces and hand braces, cried because of the really hard movements and tasks the therapists have asked her to do, and cried because her constraint cast was itchy and hot.  With each tear I stood strong as her cheerleader.  I reminded her how important this was and that we needed to trust our team since they were there to help her.  But silently I always wonder as a mom if I am making the right choice.  I have second guessed the hard things we've asked her to do and worried that it would break her spirit.  That it would make her feel like she needed fixing even though we obviously love her no matter what.  I've second guessed the play dates
and camps we have missed because she has been in therapy or constraint almost the entire summer the last three summers.  
But when I see how her left hand can rotate to grab the stick and I see how it stayed on the stick the entire game, I am reminded that all this hard work is paying off.  She is having fun, making friends AND getting therapy.  We've waited a long time for her to truly understand how all this hard work will help her.  So even though the Algonkian Tribe K/2 girls team didn't win their first game, today was a big win for Reagan!

Tuesday, March 15, 2016

IEPs, a piano school fail and a new puppy!

It has been a pretty quiet month enjoying some time without doctor's appointments or therapy but all that will change soon enough!  We got a call this week from INOVA Loudoun Hospital and we are FINALLY coming off the wait list for Cole to start back with an OT.  We already have a tough schedule Wednesday afternoons with CCD class for Reagan and Tae Kwon Do for both, but it's important and we'll make it work.

We had IEP meetings for both kids this week. I always find it interesting how much of a roller coaster I find the preparation for these meetings.  I read through the "strengths" and think "wait, but there are so many things that are hard for him/her".  Then I read through the "areas that affect education" and think "wait, but he/she is so smart".  For those not familiar with the process, IEP goals are reviewed annually and most of them are done in the Spring.  Then every three years the child needs to go through eligibility to determine if he/she still needs services.  We were told Cole will be always be found eligible since he is legally blind and that will not improve.  And as much as I like knowing I won't have to fight for services, it makes me sad to think we will always go through this process with him.  His meeting went well although I have a lot of apprehension about how the CCTV will be integrated into classroom activities and how he will do in physical education.

Reagan's review also went well although given she is currently going through testing for eligibility, we will be meeting again in May to be presented the findings and determine if these goals can be carried forward. We will know soon enough!

In other news, we decided after 10 days of the kids practicing taking their stuffed dogs to go outside, they got to pick out a new puppy!  On March 6th we adopted Shelby, a 4 month old labrador terrier mix born on November 5th, 2015.  She is the sweetest of puppies and is bringing so much joy to our family.  Reagan especially has taken on many of the responsibilities of feeding, toileting, playing and most importantly cuddling. Shelby has truly been a blessing and we are all having fun being outside more, taking her for long walks and cuddling.

As the weather has warmed up, we have started thinking about summer and looking for camps.  I learned about a music program in Ashburn called Notes and Beats. I was pretty excited that they have summer camps and after school programs.  I took Cole for a trial lesson last week and it was horrible.  Although briefed, the piano teacher didn't seem to realize that Cole is legally blind.  Something I am realizing that perhaps needs more explanation.  I find myself not expanding if there are no questions, but I learned a lot after this experience about how I need to approach new situations with him.  Cole did VERY well if you ask me.  He sat attentively during his lesson and was very engaged.  He kept falling off his stool because he was leaning forward to see the sheet music and was reprimanded twice by the teacher.  After being reminded he was blind the teacher moved the bench forward and that helped a lot.  Halfway through Cole turned and looked at me with a goofy smile and gave me a thumbs up.  But at the end the teacher said that unfortunately he doesn't expect Cole will be able to keep up with the sheet music since the notes gets more complicated as he progresses.  I was SO caught off guard I immediately said, "no problem, thank you for your time" and we walked toward the door.  Cole looked up at me with those precious eyes and said, "Mom, how did I do?"  As my eyes welled with tears I told him how well he did, how proud of him I was and remarked on his excellent listening skills.  As we walked through the front lobby the woman at the front desk asked how it went (with a waiting room full of people) and I said, "well unfortunately not very well.  Apparently your program is unable to accommodate for his visual impairment."  She looked shocked and offered no solution or apology.  It took me back to the day I was touring preschools for Reagan and the person told me she would not be a good fit if she couldn't pull up her pants after toileting (still hard for her to this day).

We will find another music teacher who can help Cole.  I have no question about that. I don't even want to consider working with a program that doesn't have a solutions based approach. However, I am continually surprised at how I ride this roller coaster feeling like my kids can fit in like other kids and then get smacked in the face with the harsh reality that even in 2016 there are places that do not understand the importance of supporting children with different needs. I thank God for all the amazing people in history who have helped get us to where we are today, but I am amazed at how far we still need to go.  I feel as though I failed those coming behind me for not educating this teacher, but as I walked outside my emotions took over, I picked Cole up and I started to cry.  Not for me, but to think there are people in this world who will approach my children in a way that they will have to prove themselves to be worthy.  It is so painful as a parent to see this and I want to strip this ignorance.  I want to place my children in a bubble where they feel loved, accepted and capable.  But I remind myself that my role in this journey called life is to educate them on how to advocate for themselves.  Not to tell the teacher to push in the bench, but to ask Cole if having the bench closer would help him to see the notes better.  Teaching my kids to advocate is a lot more work than helping them through life, but as they told me at the Department of the Blind, one day, if I am lucky, my children will move away and be self sufficient.  I will not always be there to help them.  And to make that happen, our job as parents is to give them every skill they need to survive and thrive. And so we continue...